10 months ago today...

Caleb Andrew came into this world and he has blessed all of our socks off ever since! He has defied so many 'odds' already, he is truly a miracle. Coming into the world with Downs and two heart conditions, all doctors said he would have such a hard time. He has truly shown them! :) He is growing beautifully and our last visit with the pediatric cardiologist (we saw a different one this last check up), well, lets just say, he was amazed. I am sure before he came in to see Caleb, he looked over his file and expected to walk in and see a sickly, small baby. No, not Caleb. The cardiologist kept saying over and over "he looks SO good!" This doesn't mean Caleb does not need his major repair surgery, unfortunately, it just means Caleb has defied so many odds in the heart defect world. He has grown well, he is very alert and attentive, he is rolling, overall a very happy boy. We are hoping to avoid the dreaded heart surgery until right after his 1st birthday. His big brother, Ryan, will turn 10 on 7/31 and Caleb's bday is 8/2, so we are hoping to get those celebrations in before life turns all about going to and from Fairfax Hospital again.

Caleb now weighs 17 lbs. 3 oz. He is quickly outgrowing the "infant carrier" car seat, but he is not sitting up yet...so that will certainly present a challenge when it comes time to run errands and he cannot sit up in the shopping cart. His therapists are certainly working on this every time they come, here's hoping he will get the hang of it soon. His muscle tone is a little low b/c of the Downs, so using all of those muscles to sit up and hold himself there is a little bit of a challenge, but we know he will get it!

Thank you so much for joining us in this journey! We will certainly keep you updated as to when his surgery is scheduled. They have to do a heart catheterization procedure first, which is going to be in mid-to late- July. This will give the surgeons all the pictures they need of his current heart situation before they get in there. They will know exactly what they are looking at when surgery time comes. I am not sure how this momma is going to handle going through all this with our precious boy, but he did great after the first surgery, so we can only pray he does just as well after this one. His complete repair is SO much more intricate though. Not to mention, we are all much more bonded to him now. Dear Lord give me the strength!

Coming soon...

Just wanted to let you know that Caleb turned 9 months old yesterday, wow! We are having him dedicated this Sunday, Mother's Day, so stay tuned...more pics and dedication photos coming soon...what a huge milestone for all of us. A year ago, we were wondering how in the world we would get through this pregnancy, esp. how he was going to 'turn out'...look at him now! :)

8 Month pics...update below...

8 Months and we are on a roll...

Once again, we are here hoping we have not lost all of our 'followers' with our delay in updating Caleb's blog. Sorry!!

The last couple months have been quite busy. My original surgery was cancelled by my GYN, so I proceeded to a new one and so thankful I did! What a great Doctor!! He had no problems "taking care of this problem" for me and so he did. March 17th I endured my first major surgery and am recovering well. So far anyway. :) It is hard to not do too much around the house, as everyone says you only have one chance to heal, so I am trying hard to 'rest'. he he...pretty tall order for a mom of 3. I am just glad to have it behind me as we prepare for Caleb's heart surgery in the next few months. Here's hoping I am back to 100% by then.

Caleb continues to bless us each and every day. He is now rolling all over the floor and bless us with a wonderful smile whenever we need one! We never know where we are going to find him once he gets rolling, he certainly does not roll straight, a little too head heavy. :) He weighs 15 lbs. 9 oz. now as he loves his solid foods. We are already up to twice a day on solids, so I am sure he will be on a more regular schedule soon.

His last cardiologist visit surprised us as his oxygen was back up to 85, so surgery was not as close as we had thought from his previous visit. So here's hoping that continues and he will be as close to one year old as possible before he will need to have his heart repair surgery done. At his previous visit his oxygen was down to 81, so the cardiologist certainly thought it was going to continue to drop slowly so we would need to start thinking about the surgery in the near future. He does go back in a couple weeks, so I guess that will be telling as to whether his oxygen is still good or low again. He also goes to a pulmonologist for his floopy airway, although there is not much they can do for that. I guess it would require surgery if there was a defect, but his upper GI did not show one, so it is just a really noisy airway. Some days are better then others, but boy, he sure can get noisy.

Thank you all so much for your continued support and prayers during this journey.

Enjoy all the pics!

6 months later...

...here he is...rockin' some red in honor of National Wear Red Day. Yes, it is mostly about women and heart disease, but Caleb is still in great support of the Heart Association and their work in raising awareness of heart disease/issues. :)

Also included is one of our first attempts at starting solid foods! At his 6-month check up the other day, he weighed 13 lbs. 11 ounces. 26 1/2 inches long. Still a peanut, but we love him all the same. He is starting to roll over from tummy to back and is holding his head up with great support. It is not bobbing around near as much anymore! Thankfully he is now old enough to try some solids. So a couple nights ago we tried a little bit of the good 'ole Gerber rice cereal...needless to say, he loved it...but so far it has not loved him. We went to put him to bed that night (an hour or so after his cereal) and he was very restless, he could not get comfortable every time daddy kept trying to lay him down. I guess I will try it during a different time of day and see if it still has the same effect. Here's hoping he is not already "allergic" to something.

Surgery update...

It is very hard for me to say that I went in to the GYN for my pre-op appt. this past Tuesday, only for her to tell me that she is not willing to do the hysterectomy anymore! I have been devastated to say the least. When you have spent as much time (week after week) dealing with this 'issue' as I have, her saying that she was not willing to do the surgery anymore because it is just not medically necessary YET...there are just no words. I have spent WEEKS trying to "hang on" till this surgery...knowing that if I can just get there, I will never have to deal with this again. My wonderful mom has been up here almost 3 weeks helping me get through this time, providing much needed extra hands, etc... and now she won't do it?!? The biggest disappointment of my life, that is for sure. But how a Dr. can change her mind 5 days before surgery is beyond me! :(

In the end, she is going to keep my time slot on Monday in the OR and just do a procedure that she hopes will help. I am just hoping that it does not throw me into another 3 week tailspin!!

January 2011

Please forgive me for not updating this blog more often! I know there are many out there who keep checking this to see how Caleb is doing...so sorry!

I (Joanna) have been dealing with miserable post-partum issues ever since Caleb was born and it has just continued to get worse over the last couple months. I am scheduled for surgery on 2/7 and would appreciate prayers as I will be recovering from a hysterectomy at that point. I will not be able to care for Caleb anywhere near the capacity that I am used to and that is going to be SO hard for me!! My mom has been up here helping us out that last couple weeks and we are not even to surgery/recovery yet! Please pray for her strength and health as she continues to stay with us and provide some much needed extra hands...not that other grandparents and sisters have not provided lots of help as well! We could all use prayer for strength and good health the next couple weeks. I am becoming more and more useless around here and am just trying to hang on until surgery.

As for Caleb, he continues to be a bright light in our day around here! He smiles and coos at us all the time. If he is not getting enough attention, he will let you know and as soon as you come up to him and say something/give him attention, he immediately smiles and coos. Little stinker. :) He has us wrapped around his little finger already!!

Caleb is starting to roll over from tummy to back and is strengthening those legs as well. He currently weighs 13 lbs. 5 oz. and continues to do well through all of his check ups, including the cardiologist. His oxygen level remains to stay around the mid-80s, so here's hoping they will stay there for a couple more months. He will need his next heart surgery once his oxygen gets down into the 70s. We do not look forward to that day.